The story of living in spite of melanoma, CLND (X 2!), metastasis, vaccines, anti-PD-1, lung removal, and stereotactic radiation. (With a little adenocarcinoma ex-goblet cell carcinoid thrown in!!!) The story of life with family and friends. {Posts under ~ Sew Chaotically, Travel Chaotically, and Chaotic Cookery also housed within! A girl's gotta have fun!}

About Me

Who am I? That is a question the rest of you could probably answer better than I. I am a wife, mother, daughter, sister, friend, pediatric nurse practitioner, cook, teacher, gardener, lover of words and music, occasional seamstress, and homemaker. I do have a couple of talents of questionable merit: I can create a decent meal in less than 30 minutes. I can feed and/or soothe almost any baby. And I can remember practically any song I've ever heard. For the rest, I'd rather those who know me decide.

Sunday, April 22, 2018

Odds and Ends ~ Melanoma in children and cancer trial access for people of color

Even the briefest look at the data makes it abundantly clear that no group is immune to melanoma. While it does occur most in older, fair complected folks, it is still pretty indiscriminate. It can affect the young and plenty of brown skinned peeps. I wrote this in 2013: Melanoma...a disease without discrimination!!!

Sadly, while melanoma (and other cancers) are equal opportunity offenders, people are not so egalitarian!!! Though this article is a bit old, it still tells an inadequately corrected truth, NY Times, December 2016, In Cancer Trials, Minorities Face Extra Hurdles. The author notes that despite a 1993 law that requires research funded by the NIH to include sufficient numbers of women and minorities to determine whether the drugs tested would cause different outcomes in those groups, in 2015, minority enrollment in NIH clinical research was only 28% generally, and only 40% in Phase III trials. The usual players in discrimination are involved here as well: poverty, lower levels of education, and the fact that communities that fail to have a reasonable grocery store are unlikely to be the location for a major medical facility, all of which combine to diminish access to clinical trials. And as if that isn't enough, the double whammy those issues create is a population at greater risk for poorly controlled concomitant disease processes (like diabetes) that can make them ineligible for trial participation if they even manage to get to the application process.

C'mon man!!! We can do better. We must do better! People are people no matter how small!!!! And to that point....there's this ~

Here, the author notes: "Pediatric melanomas appear to be more progressive in adolescents than in young children, based on data from a retrospective study of 32 cases.

Few young children with melanoma die, despite a greater likelihood of thicker tumors, lymph node metastasis, and later diagnosis, which suggests that melanoma in young children may be biologically distinct from melanoma in adolescents, wrote Diana W. Bartenstein, of Harvard University Medical School, Boston, and her colleagues.

In a study published in Pediatric Dermatology, the researchers reviewed data from 12 children younger than 11 years and 20 adolescents aged 11-19 years diagnosed with melanoma who were seen at a single center between Jan. 1, 1995, and Dec. 21, 2016. The children ranged in age from 3.3 to 19.5 years.

Overall, significantly more children than adolescents had spitzoid melanoma (50% vs. 10%). In addition, children were more likely than adolescents to present with stage 3 or 4 cancer (58% vs. 25%) and with Clark level IV and V tumors (42% vs. 35%), although these differences were not significant. The median Breslow thickness of lesions was greater in children than in adolescents (3.5 mm vs. 1.5 mm) as was the median mitotic index and children were more likely than adolescents to have neural invasion, but these differences were not significant either.

During the study period of more than 20 years, none of the children younger than 11 years died, compared with four deaths in adolescents, a statistically significant difference. The follow-up for surviving individuals ranged from 9-37 months with a median of 44 months. The study findings were limited by several factors including the small sample size and difficulty in assessing spitzoid tumors, the researchers noted. However, 'these results support the hypothesis that melanoma in young children may be biologically distinct from melanoma in adults,' they said. 'Alternatively, melanoma sub-type may drive survival differences between children and adolescents.'”

So...all that is a bit...depressing, overwhelming, disheartening??? Well, yes. BUT!!! We CAN do better! For some time I have felt that melanoma, as we currently know it, will be found to be different diseases or at least notably different in ways we will eventually understand. I suspect that uveal, mucosal, and possibly pediatric/adolescent melanoma will be found to be quite different in some important ways from cutaneous melanoma. Unfortunately, we are most certainly behind the curve here since for years and years, clinical trials have failed to allow participation of those with CNS involvement, ocular/uveal, or mucosal melanoma. Most trials also require participants to be over 18 years of age as well, though there are separate studies available for children in some settings. These points have conspired to create two circumstances:
1. A set of untreated melanoma peeps in desperate need of care.
2. A tremendous information gap about how these patients will respond to treatment.
WE CAN DO BETTER!!!

In regard to medical care for minorities in this country, the data is sadly clear. If you have brown skin in America you are less likely to attain the care you need, whether we are talking about care generally or cancer trials in particular. To my credit, after a very brief sit-down in Dr. Weber's office at Moffitt Cancer Center, in Tampa ~ after a very long (months and months!!!) research process by a trained medical professional to even learn of the trial option in the first place, an incredibly long drive, through a snow storm, on Christmas day, that I was lucky to have the transportation option and money sufficient to indulge in what, at that moment, was a merely investigative journey (not to mention the financial and physical wherewithal to participate in the trial for over 2 1/2 years!!!) ~ I did ask Weber, "Do you note in your research papers, that your trial participants are predominantly wealthy white people?" My B, aka Donkey most certainly on the Edge, almost passed out on the spot with some sort of heart attack. Not that he didn't think this was a valid question. But, because he didn't want me to piss off the man who held the keys to the only possible treatment option I had. Dr. Weber gave me a rather long look and replied, "No, but I probably should."

Fixing these problems will not be easy. They are old, ingrained and complex. But that doesn't mean it can't be done. I will keep working to find ways to make it better. And you can bet...that until things are better....I won't quit yelling about them. Wishing love, luck, and equality to you all. ~ les